By Tim Barkley. October 2020.
“Just let me go. I don’t ever want to be on life support!”
“If I’m ever on life support, just pull the plug. Right away!”
“I wouldn’t want to be on life support. If I have to be, not more than 24 hours!”
This writer spends a good bit of time talking to folks about end-of-life issues, including life support. The question comes up: If you were in a situation where keeping you alive required medical interventions and the use of life support, how long would you want to be in that situation?
Years ago, the fear was that “they” would let you go too soon. Everyone worried about the hospital or nursing home wanting to empty the bed to bring in a new patient. Now, the fear is that “they” will keep you alive too long, that you will be that person waiting interminably, without hope and without competence, until finally you just wear out and mercifully pass from this life.
Most clients want “a fighting chance,” but don’t want to “lay there forever with tubes coming out of them.” How to strike that balance? It’s especially difficult in a culture where the family unit is fractured, and many folks are relying on the medical profession to protect them from what many see as a fate worse than death: the apparently futile continuation of bare biological existence ad infinitum, until they mercifully pass from this life, having escaped the clutches of “the machines.”
Folks want control of the situation, but they realize there’s no way they can personally exert the control they want at the time they need to exert it. The best they can do is sign something that reflects their current intentions, and then appoint someone that they trust to implement those intentions – and hope their trust is not misplaced.
The problem is exacerbated in a society with strained family ties or no family at all. Many “boomers” chose not to marry or not to have children, or both, so they’re dependent on friends their own age to implement their intentions – except there’s no reason to believe that their aging friend will be able to act when needed. And as rewarding as “furbabies” are for so many reasons, they really can‘t be trusted to make good medical decisions.
And it’s impossible to know in advance what the situation will be at the time – there’s an infinite variety. Maybe as a desperate attempt to exert at least some control over what is not just unknown but unknowable, many clients react as above: no life support, not ever, not for any reason. The certainty of death, even an unnecessarily early death, is better than even the possibility of “tubes.”
I mentioned all this to a client who is an ER nurse, and she grimaced, “They don’t understand. People are sometimes on life support for days before we even find out what’s wrong. Then we can intervene, and they usually get better. It’s not about whether they’re ever on life support, but whether they’re left on life support when there’s no hope of recovery.”
How do we find balance, the tertium quid, the middle road? Not too short, not too long, but taking into account all the circumstances at the time. Trusted family or friends can help sort it all out in the moment. Not everyone is blessed with these folks in their life, but good written direction can guide anyone’s actions, and discussion beforehand can weed out those who can’t act decisively when needed or who will substitute their agenda for yours.
You should make sure you have an up-to-date medical power of attorney. While these documents do not really expire, changes in the law, technology, medical ethics and terminology – along with changes in your life and your relationships – require that they be reviewed periodically. This writer recommends (a) at every change you notice, and (b) at least every 5 years, more often if your situation is in flux.
You should have at least considered the MOLST form – the Maryland Medical Order for Life-Sustaining Treatment, available online at marylandmolst.org. The form goes into much more detail than a DNR (Do-Not-Resuscitate) Order. The latter is a simple “on-off” switch – do life support, or don’t.
The MOLST allows you to direct care in advance, including whether you would consider receiving certain kinds of care (dialysis, for example), and if you would receive it, would you accept it only for “acute” situations such as immediately after kidney injury or failure, and if so, for how long – or would you accept that care indefinitely, if that were necessary to extend your life.
The MOLST is intended to be completed in conjunction with your medical professional, or you can complete it and sign it yourself. In either case, keep a copy with your medical power of attorney, to guide your decisionmaker. And like the medical power of attorney, you should update it periodically. What was appropriate when you were an active eighty-year-old playing tennis twice a week might not be apropos after you’ve had a bad fall or an accident.
And realize that life on life support is not necessarily the hopeless situation most people fear. A friend of this writer was on “life support” for years prior to his death. The dialysis is what let him travel cross-country and see his new grandchildren, visit friends across the continent, and continue as active a life as possible until very near the end. Life support for him was support for living.
So it’s about balance. Your planning professional should work to help you create balance in this most critical area of your life … and your passing from this life.
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Attorney Tim Barkley
The Tim Barkley Law Offices
One Park Avenue
P.O. Box 1136
Mount Airy
Maryland 21771
(301) 829-3778
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